Greenville doctor, who lost his brother, spreads the word about genetic condition

Hopes to save lives by raising awareness

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Matt Robersons, with his wife Amanda, and their children, from left, sons Eli, 7, Sadie, 11, and Jack, 11, at their home in Piedmont Wednesday, August 1, 2018. Robersons has malignant hyperthermia, which is a genetic condition that predisposes a person to a fatal surgical complication.(Photo: BART BOATWRIGHT/Staff)Buy Photo

When Matt Roberson’s 2-year-old brother suffered a fatal complication during surgery, no one was able to tell his parents why the child died.

"The doctors were absolutely baffled," he said. "Nobody knew what it was then."

Decades later, when his own infant son needed surgery, medicine had advanced enough so that the Greenville physician was able to be tested to see whether he, and by extension his baby, had the same genetic condition that had led to his brother’s death.

Because he tested positive, his son was spared the risk of the condition, called malignant hyperthermia. And today he's a healthy 7-year-old.

So Roberson wants to spread the word about the condition in the hopes of preventing others from sharing his brother’s fate.

Bad reaction

Malignant hyperthermia is a genetic condition that predisposes its sufferers to have a bad reaction to certain anesthetics that, if unrecognized beforehand, can lead to an exceptionally high body temperature and death if not treated appropriately, he said.

“Basically it (the fever) gets high enough to bring about multiple organ system failure,” Roberson said. “The body can’t function at that temperature.”

Evolving tests

So Roberson, 44, an orthopedic surgeon at Bon Secours St. Francis Health System, decided to get the test.

No one had been tested for it up until then because it involves a muscle biopsy that must be done during surgery, he said. To keep him safe, doctors avoided using the anesthetics in question.

Because scientists are discovering more of the genetic markers for MH, the hope is they will eventually come up with a blood test to check for it rather than a biopsy, he said.

“They confirmed that I do have MH,” Roberson said. “And that’s the first time since my brother died that my parents knew definitely what had happened to him.”

Raising awareness

So when baby Eli had to have half of his left lung removed because of a benign mass at just 10 weeks old at Children’s Hospital of Philadelphia, doctors knew to avoid using the anesthetics that could cause the reaction.

“If you know you have it, you can avoid the agents that cause it,” Roberson said. “The key is knowing.”

At the time his brother died, he said, nobody knew what MH was. So the Robersons are sharing their story to let others know about it.

“Our experience with Eli and Children’s Hospital is they told us we were literally the only family they had ever taken care of where there was a definite diagnosis,” he said. “We want people to be aware.”